"Everything is different now" - Roy's HSCT story

Roy is 49 and has lived with MS for 15 years. Last year he had HSCT at Imperial College London. This is what happened.

Getting diagnosed with MS

I used to be a courier. Before I was diagnosed I kept noticing when I was driving that my legs were going numb. I couldn’t feel my feet and I had pins and needles from the waist down. It kept getting worse.

I was diagnosed with relapsing MS in 2003, but since then moved on to the secondary progressive type. I was very depressed at the time. I couldn’t accept the thought of being different.

Brain fog and loss of balance

It was only about two years after my diagnosis that I had to start using a wheelchair. I was relapsing near enough every month. It would be different things - sometimes my arm would go numb, or my hand. Other times I’d lose my balance or get brain fog.

I was given steroids and I would just about get back normal and then bang, the whole process would start all over again.

In this section

My neurologist wouldn't put me forward for HSCT. He said I didn't fit the criteria and it would kill me.

Finding out about HSCT

I first heard about HSCT when I was watching a Panorama programme. It was a lightbulb moment for me. I just sat on the sofa and started crying. I thought ‘I want some of that!’.

I’d been on a drug called Tysabri. It worked to begin with, but then my MRI scans showed new brain lesions. So I was back to square one.

I went to see my neurologist but he wouldn't put me forward for HSCT. He said I didn't fit the criteria and it would kill me. I was devastated.

A talk at our local MS therapy centre

Shortly after that I met Sarah who’d had HSCT at Kings. She came to our local MS therapy centre to talk about her experiences. Sarah was four months post-transplant, and was on crutches when I met her.

It turned out she’d had the same neurologist as me, and he had also told her she couldn't have HSCT. So I decided to go over his head. My GP gave me my medical notes and MRI scans. Without his backing it would have been impossible.

The risks of HSCT

I started writing to Imperial and had the stem cell transplant in October. They told me I had to be 100% focused that it’s going to work, and I was.

They said they’d never seen a person so determined to get back to how they were. I was really worried about the risks, but didn’t want to think it might not work.

All my family really supported me. I sat down and talked to Jack and Abi, my children, and told them what was going to happen – that there was a 1% chance I could die. But I just wanted that treatment so bad I was willing to risk it. To get out a wheelchair would be everything to me, so they were behind me all the way.

I knew the treatment would be bad, but I had no idea just how bad it could get. It was about two months in total. For half that time I was in isolation.

The treatment

I knew the treatment would be bad, but I had no idea just how bad it could get. It was about two months in total. For half that time I was in isolation because they have to kill your immune system.

When Helen came in to see me she had to totally cover up and wear a mask, and she wasn’t allowed to touch me. I was also given a drug like bleach that sent me a bit loopy.

But it was worth it. After 10 years in a wheelchair, I can now walk again.

My life after HSCT

Just to be able to walk through my front door is incredible. I could never do that before – I had to go through the back patio doors because my chair couldn’t fit.

We went on holiday to Turkey last week and I walked on the sand and went in the sea. I don’t know how to explain what it means, it’s too much to put into words.

I’ve even started volunteering as a police cadet leader. My company medically retired me in 2003 and I’ve always wanted to work again but realistically know I couldn’t manage a full time job. So being able to volunteer like this is amazing. My next goal is to be a special constable!

Just to be able to walk through my front door is incredible. I could never do that before.

Not always plain sailing

But it hasn’t been totally straightforward. While I was having the treatment I had to have loads of different scans, and one of them revealed a tumour on my kidney. I found out the week before Christmas last year.

They found the lump while I was having treatment, but didn’t tell me until I’d come home. If I hadn’t had the HSCT I would never have known. They removed earlier this year and are keeping an eye on me.

Everything is different now

One of the greatest things is when I bump into people on the street who saw me in my chair before. My best friend saw me and just started crying his eyes out.

I still struggle with fatigue and other symptoms occasionally, but everything is so different now, and it’s all down to the treatment – which I might never have had if I hadn’t kept persevering.